Category: Family matters

“Difficulty doing specific tasks isn’t the same thing as being an actual child. … I not mentally 12. I am mentally 28. I just have an intellectual disability.” -Ivanova Smith, adult with an intellectual disability
“You can support people without condescending to them. … Yes, I’m an adult. That doesn’t mean that I don’t have support needs. Rather, it means I should be able to share what my support needs are and direct the means by which I receive support.” Finn Gardiner, adult with a developmental disability

At least one form of discrimination in our society is alive and well. We discriminate against young people, every day, in policy and in practice. For example, in the United States, we don’t let people drive a car until they’re 16, vote until they’re 18, or buy alcohol until they’re 21. We deny freedoms to our citizens based on age alone, and it’s not even very controversial.

I’m not going to challenge age minimums in this post. I’m just using this as an example to shed light on a more problematic form of discrimination related to perceived age. This is the infantilization of adults with intellectual and developmental disabilities (IDD), based on a concept called “mental age.” Like chronological age, people use “mental age” as a shortcut to judge the maturity and competency of others, but the consequences of judging people by their “mental age” can be far more serious.

The concept of “mental age” was first introduced by Alfred Binet, co-creator of the first IQ tests, in the early twentieth century. Generally, “mental age” has been measured by comparing an individual’s score on a standardized IQ test with the average performance of their same-age peers. For people with IDD, “mental age” may also be estimated by comparing the person’s demonstrated physical, speech, adaptive or cognitive skills against the average for various age groups.

Not surprisingly, “mental age” came about alongside the eugenics movement in the United States. Mental ages were used to classify various groups of “feebleminded” individuals by severity: Adults with a mental age of 9-12 years were classified as “morons”; those with a mental age of 6-8 years were classified as “imbeciles”; and those with a mental age of 2-5 were classified as “idiots.” Individuals from any of these groups were thought unfit to reproduce.

Besides the disturbing history of mental age theory, using mental ages to classify individuals is problematic because:

First, mental age oversimplifies: Boiling an individual’s intellectual, developmental and adaptive functioning down to a single number obscures that person’s complexity. Some individuals may be highly skilled or knowledgeable in some areas, but experience impairments or naivete in others. Tests that measure only one or a few kinds of intelligence can miss other kinds of intelligence or compensatory skills that the individual uses. Intelligence test scores can also be biased by social and cultural factors unrelated to actual intelligence or skills.

Second, mental age is treated as a ceiling: Chronological age is, by definition, a dynamic concept. People are constantly aging, and this is part of the reason why age minimums are considered relatively acceptable in society: They are temporary. Eventually, everyone will get old enough to drive, vote, or buy a drink. In contrast, though, mental age is often described as a limit that someone reaches and cannot exceed. An adult with IDD may be labeled as having a mental age of 3, 7, or 10 years old, and once that mental age is reached, they are expected to think and act that way for the rest of their life. For example, in the 2001 film I Am Sam, the protagonist-a single father-is labeled with a mental age of 7. It is strongly implied that he will no longer be a fit dad after his child turns 8 because his daughter will continue developing while his development is locked. Although adults with IDD may reach plateaus in certain skills, everyone has the potential to adapt or improve their life circumstances. There have been powerful stories of adolescents or adults with severe communication impairments, for example, who showed great leaps in communication skills when presented with the right technology, the right support person, or both. Oftentimes it was discovered that these individuals had knowledge or skills that they had been unable to express to others in the past. Mental age labels artificially restrict that growth process. (Ironically, Alfred Binet himself believed that intelligence could change over a person’s life, but the IQ tests he helped design have been taken out of that context).

Most important, mental age is used to control freedoms and support: Outside the disability space, we understand that younger children usually need more support than older children and adults. We also reserve some freedoms (like driving, voting or buying alcohol) exclusively for older teens and adults. In the disabled world, too, presumed mental ages are used to deny freedoms. Even if a teen or adult with IDD is not explicitly labeled with a mental age, the prevailing belief that people with IDD are childlike leads too many parents and educators to infantilize them. For example, Finn Gardiner writes:

Infantilisation is very familiar issue to me. I myself have a developmental disability and my parents—my father in particular—infantilised me as a teenager and as a young adult. I wasn’t allowed to do what many of my peers were allowed to do; my parents claimed that I ‘wasn’t ready’ for many of the things everyone else my age seemed to be allowed to do, like going to school dances. My parents restricted what I read, thinking that I wasn’t mature enough to handle heavier themes in books, TV and films despite encountering similar subject matter in my assigned readings at school. They would force me to attend church even when I’d told them clearly that I was no longer religious; they justified this by claiming ‘in our house, we serve the Lord’, even though I was only going through the motions of practising Christianity. … When I was nineteen years old, my parents installed parental controls on my Windows account. … I was old enough to vote. In fact, I had voted when I was eighteen; I distinctly remember being eager to vote against George W Bush in 2004. My parents didn’t always give me the right to try, or if they did, they would do it begrudgingly and blame me if whatever I tried didn’t work out, instead of listening to me and working with me to identify strategies that did work for me. For them, supporting me entailed controlling me.

As Finn points out, these actions are not just insulting and frustrating, but could also be dangerous. A teen or adult with an IDD still has desires concomitant with their chronological age, including a desire for autonomy. An individual who has been infantilized may gravitate toward peers who seem to respect their autonomy. If that same individual has never been educated about sex, drugs, or other issues relevant to their chronological age, they could be an easy target for abuse and exploitation.

And, age can be used as a weapon in reverse, too. An adult with IDD may be denied supports due to their age, or admonished to “act their age” during a public meltdown, for example. But, many nondisabled adults have meltdowns, too. (We might see one on the floor of Congress today). Being an adult does not mean one lacks support needs, just as having support needs does not mean one is essentially a child.

So, how do we combat thinking based on mental age theory?

First and foremost, we need to separate maturity from support needs. Ivanova Smith suggests some ways in which we can concisely describe another person’s support needs without any reference to mental ages. For example:

Ivanova can’t drive due to developmental disability that causes them to have struggles with multitasking and hand eye cordination.
Ivan needs help across busy streets because they don’t understand traffic very well and need support to be safe.
Ivan may need support with emotional regulation because they process emotions differently than other people.

In a related vein, disabled children often receive primary support for disability-related needs from their parents or other family caregivers. Once these children become adults, they may still need human supporters, but having a parent continue to be the disability-related support worker can become a conflict of interest. When parents support their children, they hold authority in the relationship, but when disabled adults get support from people like readers, sign language interpreters or personal care assistants, they benefit from being the one in charge of the interaction. For example, when I was a child, my parents read to me often. They controlled what, when, and where the reading took place, which was entirely appropriate when I was a small child. As an adult, I still need human assistance accessing print, but I need to be the one in charge of what is being read to me. It can be difficult for a parent and adult child to renegotiate a supporting relationship in such a way that the parent is essentially working for their adult child (even if unpaid). It is important for adults with IDD to have self-determination, to the greatest extent possible, in directing who will support them, with what, when and where this support will occur. Depending on the resources available to that individual, and their specific impairments, family members may need to be involved with some of that process. This can work, but only if the family member(s) are willing to consider the disabled adult as someone with their own voice in decisionmaking.

Content warning: detailed discussion of filicide; discussion of Applied Behavior Analysis.
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“If the parent is so antagonistic toward their child that they’re contemplating violence, then something needs to change and it’s not the child — it’s the parent.” Samantha Crane, Director of Public Policy, Autistic Self-Advocacy Network

On this blog, we talk a lot about “benevolent” ableism-people being overly helpful or patronizing toward disabled people. But there’s a much darker side to ableism, too. Like other minority groups, disabled people are disproportionately targets of violence and abuse. You may not hear it in the news, but there were 128 disability hate crimes in the U.S. in 2017
But unlike other minority groups, disabled people are targets of one of the most shocking forms of violence: attempted or actual murder by their family members.

The Ruderman Family Foundation reviewed media coverage between 2011 and 2015 and found reports of 219 disabled people in the United States and Canada who were killed by their primary caregivers-mainly children killed by parents, or elderly people killed by spouses. That number, likely an under-report, represents almost one murder per week
It’s a trend that can’t be explained as a few extraordinary cases.

What could possibly drive a parent to harm their own child?

I’m going to present a case study, of an attempted murder that occurred in 2013. And we can examine what happened, and what might have prevented it.

Kelli Stapleton lived in rural Michigan with her husband and three children. Her middle child, Issy, is autistic. According to Kelli, Issy had been aggressive since she was two years old, mainly toward her mother but also at school. When Issy was 13 years old, her mother enrolled her in a private behavioral treatment center for 7 months, and with a strict regimen of positive reinforcement for “good” behavior, the aggression decreased. But, when Issy came home, she started hitting Kelli again. And, Kelli learned that the local public school was unwilling to implement Issy’s strict behavior plan.

Kelli broke down, and devised a plan of escape for herself and her daughter. On the Tuesday morning after Labor Day 2013, she packed up an old van with pillows, blankets, two hibachi grills, and fixings for s’mores. She drove Issy into the woods where they shared s’mores. She gave Issy a double dose of her antipsychotic medication and brought the still-lit grills into the van, and shut the doors. As they slept, the van filled with smoke and carbon monoxide. By the time they were rescued that evening, Issy had developed a traumatic brain injury and was in a coma for four days. Kelli was charged with attempted murder. Ultimately, she pleaded guilty to first-degree child abuse and was sentenced to 10-22 years in prison.

I’m not even going to get into the horrifying amount of support that Kelli got on social media, with posts arguing that this was her only option. Nor will I talk about the disturbing trend of journalists centering disability filicide stories on the killer’s “burden” rather than on the victim. Or the fact that, unlike Kelli, many people who kill their disabled family members get off with much lighter sentences than those who kill their nondisabled family members.

No, I’m a social psychologist interested in predicting and controlling human behavior. So I don’t want to talk about the after, I want to talk about the before. I delved into Kelli’s blog and media appearances to find out what kinds of thoughts, emotions, and behavior precede such a tragedy.

And, the clues were strikingly obvious.

Kelli started a blog exactly one year before her crime, called “the Status Woe.” The blog started innocently enough, with some self-deprecating humor (not involving her daughter) about a bout of diarrhea on a camping trip. But then, the blog quickly turned to the evils of autism. As I read, it became clear that Kelli was all out of love or compassion for her daughter. She had been on a lifelong journey of trying to cure her daughter’s autism, starting with a rigid home program of applied behavior analysis (ABA) during Issy’s toddler years. She’d tried all kinds of diets and supplements, and behavior plans, to no avail.

In one blog post, titled “Autism’s Hard to Love Club,” Kelli wrote that “I have a daughter firmly planted in autism’s Hard to Love club” and then she preceded to describe issy’s overweight and poor personal hygiene to total strangers. In another post, deceptively titled “Inclusion: Doing It Right,” Kelli wrote about how she would draft the “mothers of the class”-peers and older children with helping dispositions- at Issy’s school to be her “helpers” and assigned “friends” in elementary school, and how all the kids wanted to be Issy’s “friend” so they would gain status and approval from adults. (Disability Wisdom readers know that’s not real inclusion!) Embedded in this post about fake inclusion is the comment that when new kids meet Issy, they discover that “Clearly she isn’t “normal.” Kelli also posted videos of Issy’s aggressions on her public blog, and the videos were edited such that the cause of the aggressions was never clear. She blamed Issy’s aggressions on “autism, hormones, and whoknowswhatelse.”

Kelli also gave a radio interview around the same time as she wrote her blog. On the interview, Kelli admitted that her ABA treatment may have contributed to Issy’s aggressions, saying, “I’ve been in her face since before she was two years old” reinforcing Issy’s every act as she tried to shape non-autistic behavior. On the air, Kelli didn’t sound like a murderer. But, her entire focus was on treating Issy. when the psychiatrist on the show asked Kelli if she had gotten counseling for herself or the rest of the family who was impacted by Issy’s aggressions, Kelli kept saying she just needed to focus on Issy and getting Issy’s behaviors under control before taking therapy herself. The psychiatrist warned that aggression was a family issue, that the entire family was involved and that “eventually, someone is going to get hurt.”

I cannot pretend to imagine how hard it must be to live with a family member who is aggressive on a regular basis. Undoubtedly, stress and burnout contributed to Kelli’s tragic choice. But, aggression is not an inevitable consequence of autism. Antisocial behavior never occurs in a vacuum. It not only impacts the entire family, but it is caused and reinforced by interplay between one’s internal neurology and the external environment. And perhaps one of the least-appreciated factors contributing to a disabled person’s alleged behavioral difficulties is ableism in the family unit.

I wonder what it would have been like for me, if my parents had kept me on such a tight ABA leash, getting in my face and correcting my every action since before I was two years old. If I knew that my parents not-so-secretly wished I wasn’t born the way I was and did everything they could to try to change me. If my parents filmed me in my most vulnerable moments and put those videos out along with weight-shaming comments on the Internet. If I had sensory needs my parents and teachers ignored. If I had no outlet for expressing my turbulent emotions during puberty, and if my attempts at communication were dismissed.

That’s right: I’d probably start hitting, too. And I’d probably keep aggressing if I learned that aggression was the only way for me to control my own life.

Issy Stapleton nearly died because of her mother’s ableism, plain and simple. In an interview with New York Magazine after her sentencing, Kelli recounted the day of the crime, saying of her fantasies of the afterlife on that day, “We will be done with autism completely … “For the first time
in my life I am going to be able to have a real conversation with her,
and see her. Get to know her, without the perseverations and the
aggression. In her real voice, not this robot voice.”

Kelli could not bring herself to accept the child she had. She tried in vain to change Issy, and Issy responded with aggression. The violence escalated until Kelli came to the conclusion that a murder-suicide was the only way for her to get the child she really wanted.

Preventing disability filicides goes far beyond just giving parents more respite services or better insurance coverage for therapies. (Indeed, Kelli was on her state’s waiver, where she had nnearly 24-hour help with Issy at home. Other parents with less support don’t hurt their children). Prevention needs to start much earlier. Anyone who plans to become a parent must get good, balanced information about disabilities and come to understand the normality of disability. Because, the statistics show that one in every 88 parents will bear an autistic child. Up to one in five parents will bear a child who, at some point in life, becomes disabled. Disability must be presented in our schools, our workplaces, our neighborhoods as a natural part of the human condition. People planning to become parents must have opportunities to examine their biases about disabilities and eventually come to accept the possibility of having children whose abilities might differ from their own.

From a policy perspective, this might mean having disability studies as a mandatory course in high schools. It might mean that whenever a child is diagnosed with any disability (whether in utero, at birth or later in childhood), the family is automatically connected with at least one self-advocate bearing the same disability. And, it means that when a child or teen presents with behavioral difficulties, assessment and treatment must focus on the entire family unit, not just the one family member manifesting symptoms.

I’m 33 years old. My husband and I just celebrated our five-year anniversary. We have no children, and that’s by design. We’re a “child-free couple” as some might say. And, this afternoon I will be receiving a birth control implant in my arm, which means there’s a 99.95% chance that we will be staying child-free for at least the next 3 years.

So, why am I sharing something this personal on my professional blog? What’s this got to do with disability?

Absolutely nothing. Zero, nada. And that’s the point.

Sometimes it’s assumed that disabled people shouldn’t have children. It’s thought that we can’t be fit parents or provide good homes. Or, it’s thought that we shouldn’t pass “bad genes” on to the next generation. Not too long ago, some disabled people in the United States were involuntarily sterilized. Even today, a disabled person’s right to parent is only protected in a handful of states. On the flip side, when a disabled person does have kids, some people assume that the kids are supposed to act as helpers or even take care of the parent. The kids may be seen as means to an end.

My and my husband’s choice to be child-free has nothing to do with my disability. I know I could be a good parent with the challenges of my disability, and I couldn’t care less if somebody inherited my blindness. I am child-free because I simply have no desire to be a parent. I’ve never been a “kid person” and the idea of living with kids 24/7 and having them depend on me for their basic survival terrifies me. I’ve felt since adolescence that I have skills and talents in other areas, but childrearing isn’t one of them. I’ve never felt the biological drive that other women say they have to pass on their eggs. I do care deeply about the coming generation, I love my niece and nephews and care about my friends’ children, I have generative and nurturant instincts I follow in other ways. I am in awe of the vital work that parents do, but it’s just not for me. Perhaps there’s a deep reason related to my own childhood and the fact that I couldn’t wait to grow up, or perhaps it’s just an orientation I have, in the same way that some people have always longed to become moms or dads and see that as fundamental to who they are. Although I haven’t wanted kids, I’ve always wanted to marry a man ever since I read the proposal scene in Little House on the Prairie when I was in third grade.

People with disabilities run the entire gamut in terms of our orientations toward gender, sexuality, and parenting. Our families, partners, friends, and healthcare providers are wise when they support our freedom to make choices about our own bodies and our own lives.

Three years ago I had just moved to Seattle and I had a well-woman exam with a new doctor. At the end of the exam, she told me that if I ever did decide to become pregnant, I could come to their prenatal clinic and that she would be happy to prescribe prenatal vitamins. I could have gotten offended that she was just assuming I would want babies someday, but instead, I was delighted that this doctor didn’t see my disability as an impediment to parenting if that was what I wanted. She offered me the same services that she would offer her other 30-year-old female patients, and was willing to provide support so that I could have a healthy pregnancy. This helped us establish a higher level of trust in our patient-physician relationship.

The freedom to choose a child-free married life is not one I take lightly. Around the world, many disabled and nondisabled women cannot choose this life for a variety of reasons. Others long to become parents, but face physical, attitudinal, financial and other barriers. As much as I will defend my own right not to have kids, I will fight to the end so that my disabled brothers and sisters who want to parent have the right to do so.

I am grateful that, as a blind girl, I received early sex education at home and braille books about birth control so I could learn about all of my options without the information being filtered through another person. I am grateful that I grew up hearing that any orientation I developed toward sexuality and parenting would be valid. I am grateful that my spouse respects what I want to do with my body. (Even when we were toying with the idea of parenting, he suggested we could adopt if I didn’t want to deal with pregnancy and birth). As I prepare for my appointment today, I am grateful that the White Cane laws will allow me to get there independently, and the Americans with Disabilities Act means I can get help signing the informed consent and reading the aftercare instructions for my implant. I am grateful that my implant will only cost $30. I am most grateful for systems and supports protecting my basic agency to make decisions.

Many of my disabled brothers and sisters still struggle to realize their family dreams. Some are barred from romance by well-meaning, or ill-meaning caregivers. Others have suffered sexual abuse that has a lasting impact on their experience of relationships. Still others are isolated and go to bed each night longing for a partner they cannot find. Some of my disabled brothers and sisters have fallen quickly into marriages or parenthood they didn’t really want, because they feared they could find nothing else. Our family freedoms are still restricted by widespread lack of transportation and accessible, affordable housing; healthcare barriers; and the widespread belief that we can’t or shouldn’t govern our own family lives. Let’s work together to build a world where all of us, including the disabled among us, can have the family lives we want.

In centuries past, disabilities were often blamed on supernatural beings. It was thought that a child’s disability was bestowed as punishment for the parent’s sins, that an adult’s disability was punishment for their own sins, or that deities used disability as a way to test one’s faith.

In the 21st century, such theories have fallen out of favor in the western world. However, the tendency to blame someone or something for disability is stronger than ever. Too often, parents blame themselves for their child’s disability: They blame themselves for contributing “bad” genes (even if they didn’t know they carried such genes); and mothers may blame themselves for pregnancy or birth complications that led to a child’s disability. Tragically, such self-blaming is often reinforced by the reactions of others, fixating on what caused a child’s disability, sometimes implying or even stating that a mother must have “done something” to cause it. Other groups of people blame disabilities on environmental agents: “anti-vaxers” blame vaccines for autism; childhood learning or behavioral impairments may be blamed on omnipresent substances like gluten, food additives, or airborne toxins. And, when adults develop chronic health conditions or disabilities, they are sometimes blamed by others for becoming disabled through poor health choices, or for not doing enough to manage their own impairments.

Why are we, as a society, so obsessed with finding someone or something to blame for disability?

Blaming is actually an important aspect of human behavior. When we search for the cause of an event, we gain the ability to predict and control that event. As a species, our survival depends on how accurately we can control our environment to promote desirable phenomena and prevent undesirable phenomena. When disability is so often seen as an undesirable phenomenon, we can become driven toward finding its causes in order to control it.

Furthermore, disability blaming helps us manage our own fears of the unknown, the uncontrollable, the possibility that we may be touched by new disabilities at any moment. As long as we can pin disability on something someone else did, we can feel confident that the same thing will not happen to us or our children. Or, if we pin disability on something measurable and avoidable in the environment, like a vaccine, we can feel confident that as long as we or our children avoid that thing, disability will not touch us.

So, disability blaming can be functional. But it is also clearly harmful. Disability self-blaming creates emotional turmoil for parents, and can distract them from the important work of equipping their children with tools and self-confidence. Blaming others for their own disabilities leads to stigma and exclusion. And when disability is erroneously blamed on an environmental factor, such as autism being inaccurately blamed on vaccines, the consequences for society can be destructive. Vaccine avoidance harms not only the autistic community, but also those who are no longer protected by herd immunity. Or, families may fall victim to unproven quack theories about the origins of disability, when peddlers of such quacks take advantage of a parent’s need to predict and control disability in their child.

How do we walk away from the blame game?

We can start by examining what we do know about the causes of disabilities. Most disabilities are simply nobody’s fault. I will repeat this because it is so important: Most disabilities are nobody’s fault. Genetic disabilities appear when DNA randomly changes during the process of replication. This has been happening since the beginning of time. When a sperm and egg line up that happen to bear the same DNA mutation, or when one parent contributes a “dominant” genetic mutation, then a child is born with a new trait. Sometimes that trait is brown eyes instead of blue; other times, it’s a disability. Sometimes, acquired disability arises from an accident or illness; in most cases, this, too, is nobody’s fault. Occasionally a disability can truly be blamed on a specific individual (as in the case of disabilities caused by abuse or neglect). Even in those cases, though, focusing on blame for a deed that cannot be undone distracts us from moving forward and accepting the “new normal” of disability.

So, perhaps we need a better phrase in our language to capture the concept of “nobody’s fault.” Then, when we need to pin disability on something, we can simply pin it on “nobody’s fault.” But, that doesn’t completely solve the problem, because “nobody’s fault” is something we cannot predict or control. We need to find a way to overcome our fear of the uncertain and the uncontrollable. Anyone who knows me well will be surprised to see me giving this advice, because I’ve always struggled with uncertainty. It’s gotten easier as I’ve aged, but even today an unanswered email or an ambiguous conversation can fill me with anxiety. Heck, I’ve even previewed the ending of a book more than once because I just couldn’t stand the suspense of waiting another 20 chapters to find out what happens. In fact, I went into the field of psychology because I was so attracted to the idea of being able to predict and control human behavior through science, and to get reasonable clarity on the causes of puzzling human actions.

But, in order to relinquish our obsession with blame and accept disability as a natural part of the human condition, we must find a way to accept the uncertainty and unpredictability of human difference. The fact is that disability can touch any of us at any time. When it comes, it can bring some unwanted consequences. But ability differences also enrich the diversity of our species. Disabilities can lead to unexpected discoveries and connections. We may not be able to control the arrival of disability, but we can control our response to it. If we can learn to embrace the chaos of disability, or at least to tolerate it, perhaps we can find our way from blame to acceptance.
Related reading:Let’s Not Play the Blame Game: Parenting, Disability and Social Stigma

“I’m hopeful that maybe that woman slept a little bit more soundly, more restfully than she has in many years. Because she now knows that her grandson is exactly who he is supposed to be, and that it isn’t anyone’s fault, but just life as it is meant to be.”

I fly alone at least twice each year. Sometimes I focus on my music or my laptop during those flights. Other times, I strike up conversations with seatmates. Usually these conversations are brief and inconsequential. But as this post reveals, sometimes a chance conversation with a stranger on a plane can change that person’s life.

Even in todays “information age,” misinformation about disabilities abounds. In fact, the ready availability of answers with a single Google search allows misinformation to spread without its credibility being questioned. Much of the misinformation about disabilities surrounds their causes, fueling the centuries-old notion that family members are to be blamed for a child’s disability. Sometimes, the best people to correct such myths are those of us who live with disabilities and see them as a natural part of the human condition.

The author of this week’s post, Morénick, is an autistic woman in a multicultural, neurodiverse, serodifferent family of color. She describes a chance conversation on a plane, where she assured her seatmate that immunizations didn’t cause her grandson’s autism, but more than that, that her grandson is OK as he is. By briefly presenting correct information and the wisdom of lived experience, she interrupted a cycle of guilt and fear that was based on misinformation.

Sometimes I feel discouraged when I look at the depth of ableism around us, and wonder what I, just one person, can do. Perhaps the answer is in those chance meetings that pop up when we are just out living our lives. We never know how much a stranger might need our wisdom.